I think I am going to go crazy from this continuous pain and lack of sleep. What can one do?? I have my head wrapped in ice, covered up. candles on, took all my pills. I can't tell you when I last felt pain below an 8. Well it's been 10 all day. I pray that sleep will come to me tonight.

Thanks for letting me vent. i don't think I have anymore tears left. Or maybe I do......thhis is no way to llive your life!!!

tmj-I've had horrible migraines all day as well. Plus, the dozens of people who have LITERALLY been setting off firecrackers all day with no more than one minute in between (except for 15 minutes when the police came) have just been pushing me to the brink of insanity. The firefighters were here at 3am when someone had a Roman candle blow up in their face. The police came earlier to tell the firecracker people to stop, but no one listens or cares. They stopped for a short time, then started back up again. My head is KILLING me, so I can definitely understand where you are coming from.

tmjpain,I am so sorry about the pain you are experiencing. No one should feel like that on a continuous basis. It sounds like you are under a doctors care, because you stated you are on medication. Why can't you contact your doctor and discuss your lack of pain control. Are you seeing a Pain Management Specialist or your routine doctor. If you are seeing a routine doctor, maybe you need the help of a good PM specialist. If you are seeing a PM specialist, is he meeting your needs. Maybe a second opinion is in order. You should never feel like you have to suffer like this on a routine basis. Please seek medical attention ASAP.

Dear Tmjpain,I agree with Stella Marie, it might be time to consider going to a neurologist getting new MRI'sand maybe trying to find a better pain medication in your treatment..If it's migraines some new medicinesrecently came out and so those might help...wish I knew what else to says, other thanLots of soft caring HUGZ...(((((((((((((((((((((((((((((((((((((((TmjPain)))))))))))))))))))))))))))))))))))))))))))))))))))********************************************** * Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

Have you been to specalist about these headaches? Do you even know what kind of headaches they are? I get all kinds of headaches, but since I've been on meds to help control my migrains, those have almost disappeared except for my stress migraines. For stress migraines I take Ibprofen 800mg, drink a soda with caffiene (but not over do it as it can cause rebound), and sometimes I will ake a muscle relaxer if the muscles in my neck are very tight/tense. I know placing ice one under the neck at the base of the skull, and one on the forehead works great. Lay in very dark and quiet room. For migraines there are so many treatments out there now, I take imitrex sometimes if it gets bad enough, phenergan for nausea, and always ibprofen. I never take narcotics as those always make make the migraines worse (it may make it seem better for a short while but when they where off the pain comes back much worse) same thing with meds like fioricet, but this is just me, and it has taken me 7 years to find the right combo of daily meds to reduce frequency and pain of my migraines (I take cymbalta and lyrica daily for control). But the bottom line is if you havent seen a headache specilist yet, then it may be time to find one, they usually are always knowlegable in the newest treatments for headaches/migraines and they would be the best in diagnosing and treating you. I find that regualuar doctors, even internal doctors dont know everything that's available and they give up after a few meds. But for now I would just keep doing ice, dark and quiet room, and just try and sleep. If you start getting symptoms of not being able to move your neck down and fever or other unusual symptoms, then get to an ER asap, it could be meningitis, I had that before and it's not fun and can be deadly very very fast.

-hellokitty

Chronic Pain Moderator

Dx-Gallstones at age 14 that caused Fibromyalgia in 1998. Chronic Pancreatitis at age 15 from Pancreatic Divisum. Fell down cement basement stairs on my bottom in 2001. Got severe migraines after the epidural from my 2nd childbirth in 2002. Was rear-ended by a lady doing 55mph in 2004 then 2 months later rolled my car down a hill and did even more damage to my back. Depression caused by having chronic pain. Asthma from allergies.

meds- Suboxone for pain, Cymbalta for pain and depression, Lyrica for pain and migraines, Imitrex for migraines, Ibprofen for migraines, Ventolin Albuterol inhaler for asthma. Phenergan for nausea, Seroquel for sleep.

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." -Mother Teresa

Yes I am being followed by pain specialist etc. I go to a natural pain relief center. I have had all the tests done, seen every kind of dr. I was treated for tmj and that is corrected now. It is now a chronic pain issue and my body is very sick. I am not producing or releasing any endorphins. All my pathways are mixed up. I do not have migraines. It is a continuous headache on both temples and has always been there and is always the same. This has been ten years. Not all of it bad but enough of it. This headache has been there since Sept 2007 and severe since Oct 2008. I am being weaned off the MEslon so that the natural products can work as the script meds are blocking the process. Any narcotic med i have taken has never helped with this pain. I've tried different kinds of meds etc etc. The people at the center tell me I will get better but it will take some time as my body has been sick for so long. I am just exhausted in the process unfortunately and relief so badly.

Thanks for your thoughts and listening to me. It has been a very difficult weekend.

TMJ, I am so sorry you are hurting so badly. And no, a person should not have to live in constant pain. There should be something, some med you haven't yet tried that should help give you some relief. You may need to try traditional pain management if you are not getting any relief from the current center. I do wish you the best and I hope you will soon be feeling better. Post and vent as often as you need to.Anice

tmj-Have you tried cranio-sacral therapy? It is a special form of massage -- often done by specialists who only do cranio-sacral therapy. It really helped my headaches quite a lot. It has been shown for head & neck pain to actually raise the endorphin levels.

I second what Francis said about cranial-sacral. I have just started lymphatic massage as I have lymph swelling on my left side and my therapist was talking about cranial and how it's similiar. I also used mandable massage with my TMJ(I know your is better now) and it really helped mine. it definately can't hurt!

Yes I have tried cranio-sacral. I have tried all kinds of therapies. This illness has cost me thousands of dollars. It's unbelievable!!!

And I'm no where being better. I know I need to wait things out, that the chemicals have harmed me, but this is the most difficult thing i have ever had to do. And it's not the first time either, it's the second horrible bout of these headaches!!

It helps to vent and talk to those that can understand what happens in a person with chronic pain. I think many of my friends just don't understand me. For instance, two friends that I thought were such special friends have not come to see me since the fall. I have been off work and sick in bed since Oct 2008 and just having started getting out of bed in May. They never came and they never called. And i guess that became a stressor in my life. i need to avoid all stressors like that. I had more negative comments said to me by my SIL whom I thought was the one who understood me the most. That really set me back and has taken several days to get over.

What about, hypeberic (SP?) treatments, they put you in a tube and they take you downbelow sea level and bring you back up slowly, sorta like when a person comes up withthe bends, they take them down and slowly back up again, except you won't have the bends of course..It's supposed to help chronic pain, but it might be expensive...and Botox is supposed to help with chronic pain, anyways really really wish you welland hope you get a low pain day soon..soft hugz..(((((((((((((((((((((((((Suzane))))))))))))))))))))))))))))))))********************************************** * Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

tmj,I know you don't want to try meds, but I'm wondering whether you would be willing to try other things besides the natural treatments. I had Radio Frequency Nerve Ablation that lasted me for 7 years with almost no headaches at all (from not being able to work prior to that b/c I couldn't even see straight the pain was so severe). It is a very minor procedure & I was back at work 2 days later. More recently, I wanted a longer term solution so 3 years ago I got a Spinal Cord Stimulator implanted.

I know you're hoping that the natural route works -- and I hope also that it works for you, but I've also seen people who are not really qualified making all sorts of promises to desperate people. Please be careful with who you're seeing for treatment. I would hate to see you spend even more money & not get a great result.

Anyways, I will be praying for you to find much success & complete healing with your current treatment. If you ever decide you want more information about the RF or SCS, please let me know.

Tmj,I can't offer more than what's already been suggested and what you've already tried. I just hope you find some relief. Even when I've had an occasional migraine, or sinus headache that lasted a few days, I was absolutely exhausted when it finally subsided. I can't imagine how much this must be taking out of you,.

They are debating right now on the possibility of people being very low or no endorphins, it's called something like endorphine deficiency syndrome, but just like fibro, their's alot of medical professionals that dont beleive in this. You've had headaches for a very long time, I really hope there is something or/and someone that can help you. Have you been to a headache center? I know sometimes they will take people inpatient and try diffrent methods to get the headaches under control, but the problem with this is that their's only a few of these centers around and alot of us have to be able to travel. Maybe you could look into one of these if you havent already.

-hellokitty

Chronic Pain Moderator

Dx-Gallstones at age 14 that caused Fibromyalgia in 1998. Chronic Pancreatitis at age 15 from Pancreatic Divisum. Fell down cement basement stairs on my bottom in 2001. Got severe migraines after the epidural from my 2nd childbirth in 2002. Was rear-ended by a lady doing 55mph in 2004 then 2 months later rolled my car down a hill and did even more damage to my back. Depression caused by having chronic pain. Asthma from allergies.

meds- Suboxone for pain, Cymbalta for pain and depression, Lyrica for pain and migraines, Imitrex for migraines, Ibprofen for migraines, Ventolin Albuterol inhaler for asthma. Phenergan for nausea, Seroquel for sleep.

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." -Mother Teresa

Suzane,Radio Frequency Nerve AblationI have heard other people who have said they had the RF procedure in Canada, so probably if you look around in urban areas for a Pain Management Specialist & ask around you will find someone who does them. Sometimes Neurosurgeons also do them, though IMHO, the Anesthesiologists are better -- but I'm sure there are really good NS's out there, so just ask around.

RF (Radio Frequency Nerve Ablation) involves burning lesions on your nerves. They did mine at C1 -- the top vertebrae in my neck, on the main branch of the occipital nerve. That nerve feeds the sensory centers for most of the head. For me, they burned 8 lesions. They will burn the lesions in pairs. That way, the pain signal gets trapped in between the lesions & just bounces back & forth, rather than transmitting the pain signal to your brain. You will not feel anything in those areas if the procedure is successful. That means, they will limit it to the smallest area required for a good outcome b/c you will not be able to feel burning or freezing or anything, besides not being able to feel pain. Eventually, the nerves will heal themselves. Some people are very fast healers (for example, they cut themselves & the cut is completely healed within a day or two). Those people will typically lose the benefit of the RF in 12-18 months. Slow healers (like me!) can get relief for up to 6-8 years. The average is 18-24 months.

Honestly, if your headaches are as bad as mine were, 18 months of relief sounds like a godsend. Even if I had to repeat the procedure every 12 months, I would do it. :) It is super simple. If you are not anxious, they can do the procedure with just local anesthetic. It takes about an hour, depending on the number of lesions. They will do it under Flouroscopy (like an x-ray) to make sure they get good placement. They do do 2-3 trial runs with just anesthetic a few weeks prior to the lesioning to make sure that it works & to map out where to burn. Those trial runs will only help for about a day, but if you get relief, that is a good sign that the RF will help. It takes 6-8 weeks for the RF to kick in (the nerve takes time to scar over, which is what traps the pain).

I have heard of it being done with chemicals instead of with the RF laser. I think other members on this forum have had it done with chemicals.

Spinal Cord Stimulator/Nerve StimulatorThey will implant a battery pack/impulse generator beneath your collar bone or in your bum (you can usually choose which). That will send signals to the leads that are implanted on the outside of your spinal cord (SCS) or in your head, often behind your ears (nerve stimulator). They do a trial with just the leads implanted for a week to see if it works. If so, they will continue on to the permanent implant. You would need to plan for time off work for this one b/c it does involve recovery & a commitment to following very strict orders about moving your head & neck, and about not lifting more than 5 pounds (about a gallon of milk) for any reason for the first 2-3 months. It is not easy, but afterward, you have a remote control that controls the internal device that gives off a signal, kinda like white noise, that will cover up the pain signal. It is distracting & definitely noticeable. Many people cannot sleep with them turned on, but it gives good relief during the daytime & some people can leave them on at night. You can turn up the "volume" when your pain is increased, turn it down when you have less pain & turn it off when needed.I know it sounds impossible to even think that you would ever have it on anything except the highest choice possible, but after several months with it on 18 hours a day on my highest setting, the pain started to subside and I am now able to go days without it being on at all. My pain is finally under control & I couldn't be happier.

I know what it's like to be practically willing to sell your soul for some pain relief. My pain was connected with a Arnold Chiari malformation. If you had that, it would show up on an MRI, but I know a lot of other people with different conditions that found significant relief from either of these options. Hang in there! I know it's frustrating, but I really do believe there is some answer for you out there. I spent all of my savings, tried things that I swore I would never try, but at the end of the day I did find these two things that helped. :) I do see an acupuncturist & osteopath on occasion for minor treatments, but they have been honest & real with me about that their treatments are for mild pain, not for the kind of severe, out-of-control pain that I used to have.

I do wish you all the best in finding a treatment that works for you. If you have any questions about either of these treatments, just let me know.

Frances, thanks for all that great info. I am going to copy your response and bring it with me to Toronto to see if they are aware of this procedure. I appreciate you taking the time to explain everything.Can you tell me what kind of headaches you had, how long, any reason they started.Myself it's been ten years, they started for no reason. noted to have tmj, had that corrected. Now headaches are back with a vengeance. The headaches are always the same, both temples, feels like pressure.I am 51, a nurse at a paediatric hospital, on long term disability.

Frances, thanks for all that great info. I am going to copy your response and bring it with me to Toronto to see if they are aware of this procedure. I appreciate you taking the time to explain everything.Can you tell me what kind of headaches you had, how long, any reason they started.Myself it's been ten years, they started for no reason. noted to have tmj, had that corrected. Now headaches are back with a vengeance. The headaches are always the same, both temples, feels like pressure.I am 51, a nurse at a paediatric hospital, on long term disability.

I had headaches all the time. Sharp, throbbing pain in my temples & behind my ears, constant pressure-like pain at the base of my skull. I was first diagnosed with TMJ, then migraines, then all sorts of ridiculous diagnoses (like I said, I was desperate), then Arnold Chiari Syndrome. I had decompression surgery to help with the Chiari -- rare neurological disorder, headaches are not the primary symptom but often accompany the other symptoms. Starting 2 weeks post-op, I was in SEVERE pain every day. I couldn't even take it. I got a bunch more diagnoses. I had to quit my teaching job. Finally, I found my current pain specialist. He told me that since they didn't really find anything wrong (normal problems -- deteriorated discs & such, plus C7 vertebrae was not attached to T1), the best we could do was to treat the symptom. I tried injections. I did get a little relief sometimes -- when I didn't get a spinal headache from the injections (I'm wondering what kind of injections you had. Maybe that's why your headaches got worse??). I am allergic to just about every narcotic on the market & don't tolerate most medications very well at all.

It is not very likely that you have Chiari, but my PM says that pain is pain. Regardless of where the pain is originating, blocking the transmission of pain through the nerves will get rid of the pain. Now, it is critical that you ensure that you don't have some sort of severe condition causing the pain. If you do & they do this procedure, you won't feel it getting worse, which could mean not getting treated in time. As long as you are okay, though, I've seen this work for all sorts of pain. A friend of mine has a benign brain tumor that could only be partly removed & it worked for her. Another two have chronic migraines & it has helped their pain. I've talked with people at my PM's office & they have had everything from injuries to post-op pain, etc. and this has helped all of them.

I am wondering about your name though. Have you ever been examined for bruxism (grinding teeth)? A lot of people with TMJ grind their teeth. A quick trip to the dentist to check your back teeth can tell if you are grinding your teeth or tensing your jaw. That is the one thing that wasn't helped by the RF (though the SCS does cover over that pain). My dentist made this plastic retainer-like appliance for me (I think it's called an occlusal splint) and it works wonders on the muscle pain that starts by my jaw, goes up to my temples & travels back to the base of my skull when it's at its worst. It is expensive to get a custom splint ($450USD & not covered by insurance), but you can get OTC ones that are almost as good for less than $50USD.

Frances, thanks for all the info. I was treated by a neuromuscular dentist, actually two of them for my tmj and they have corrected the problem. I do wear a bottom splint, it was made in a way that my muscles are relaxed. Once I am in better shape with less pain I will be getting braces done again. The injection I had done in 2003 were trigger point injections, several of them. I didn't get much relief from those. Right now every time i go to Toronoto to the clinic the dr. gives me trigger point injections and nerve blocks. So my whole head is frozen, no pain and i can get some sleep for at least one night. If I lived closer, we are four hours away, I could go every week and get all my treatments. But unfortunately we can't do that. My DH has to work. Funds are getting pretty low and I don't know what we will do. His brother has offered to borrow from him. so desperately want to get better. I have had enough pain to last a life time as have many of you. It is no way to live. I have no quality of life right now. I continue to look for answers. We are staying with the Toronto clinic for now as no one else has any answers. They tell me not to give up that i will get better. We have not met a more caring group of people who are honest and caring as these people at the Toronto clinc.

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Hope everyone has a low pain day and some sunshine in their day!!! Sun really helps those endorphins to flow!!!!

I can almost start crying reading your thread. I also had migranes for yrs without relief. I remember all the staydol shots, imitrex injections and hospital stays. I was miserable for 7 yrs. Then one day they just dissappeared. I believe it was my hormone therapy they put me on after my hysterectomy. As soon as the new data of HRT replacement could increase your chances of breast cancer I quit. I had the hysterectomy due to uterin cancer. Then the pain went away.

Its so close to my heart to hear you and frances have to deal with this. You two will be in my prayers

Thankyou laurie. How sweet!! I hope you continue to do well in that department. I have had my hormones checked and everything is good there. maybe it would have been easier to correct if that had been the problem. I have just spent the last two hours looking for more answers to the debilitating headache. It is continuous pressure that I feel in both temples. It's been the same for ten years.

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